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"Life on Hold"

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  • #16
    HI Hanna
    in case you have not read my recent post, #30 indicicating different treatment options etc. Perahps you might find some useful info there.

    Dont give up, if we search, we will find solutions.
    Think positively and think what you have!! Good luck!


    • #17
      Originally posted by hannahmaywils View Post
      quattroboy Hey, im sorry to hear your story. I certainly wouldn't blame yourself. But like you, i do try and retrace my steps and think what the frig did I do so bad to make my eyes turn out like this!
      Its good to know that your NHS consultant has given you Ikervis. Can I ask what is AMT and Pilocarpine that you mention?
      AMT is annemonic membrane treatment. Oral Pilocarpine is a drug mainly given to those suffering Sjogren's. It stimulates glands to produce moisture, mainly saliva but can help dry eyes. There are some interesting side effects which I'll leave you too research.

      The only person in the UK doing AMT privately, that I know of is Andrew Matheson, he's very well thought off.

      Still on my wish list but I need to give my current consultant a chance. Progress is measured in months not weeks. Also we need to set ourselves small goals. Have you read Rebeccaís story? If not I recommend it.


      • #18
        Originally posted by hannahmaywils View Post
        Meibum Ian

        Please keep me updated on the Ikveris drop. Im seeing a consultant tomorrow to try and get it on the NHS. Can I ask do you have it on the NHS? If not I will have to get a prescription from the lady in London.

        Yes I have tried a weeks course of steroids. I don't think they did much unfortunately. Maybe reduce swelling marginally.

        The Lady I saw in London was called Caroline Hodd, she is based at the Dry Eye Centre ( 7 Devonshire Street, Marylebone). I know that they offer IPL there. I also mentioned to her about the stem cell injections in America by Dr. Cremers. She said two of her patients have had them and have been very happy with the results. I know there are a few other dry eye clinics in London that you could explore also.
        I have a private prescription for Ikervis. NHS was terrible for me and wouldn't consider prescribing it. It is probably still worth trying as you'll save money with an NHS prescription - but maybe go without any expectations?

        1 week is pretty short for a steroid course so maybe don't read too much into the lack of improvement.

        I've seen Caroline and thought she had a very good approach and manner, which is important.


        • #19
          Meibum Ian hannahmaywils When I went to my outpatient appointment I took a list 3 A4 pages of notes I gave the consultant. I detailed a timeline from the date I had the LASIK, all the useless appointments and bad advice from the LASIK provider. All my previous poor experiences with the NHS.

          My attempts to manage my symptoms on my own without success, which included a Lippiview assessment and Lippiflow, and all my mental health problems caused by my experiences and situation.

          I also listed my current daily routine to prove I was attempting to get on top of my dry eye, which covered the number of drops I was using, lid hygiene, eye bag, castor oil at night, Omega 3 supplements, drinking loads of water and given up caffeine.

          I listed all the drops, ointments, and other stuff which didn't help, I also said why.

          I listed every symptom I was suffering with after LASIK. I also stated the impact on my life and work.

          I also provided a full background to myself including wearing glasses, struggling with contacts, even that I suffered from acne as a teen!

          I had low expectations given other people's experience of the NHS, in fact, his opening line was it can take 12 months for things to settle after LASIK. But once I handed my list over his attitude changed.

          I think the fact he performs LASIK privately means he feels he should help me, he also pointed out I was already on my way to developing dry eye before the LASIK. Now whether he thought I should of therefore be screened out or warned I don't know.

          I would advise you go in and do not play down what you are going through, in fact, over-egg it, the problem with the NHS is it wants to be conservative in its approach. Also, my wife came in with me and reinforced everything and reinforced how serious things are.

          Don't get me wrong I really wont to try AMT and Pilocarpine so I haven't got everything.


          • #20
            hannahmaywils , regarding which procedure worked for me, it was probing, because I had many glands with scar tissue that only probing can unblock. Thatís likely why for me, LipiFlow did not work. IPL was not an option for me because I was told they do not recommend IPL for olive or darker skin (Iím Asian), because the laser is drawn to darker pigment.

            quattroboy , thatís excellent advice about bringing a complete list of all your symptoms and everything youíve tried which didnít work, and not down playing your condition. I did the same, especially when I was determined to get probing when nothing else worked. Probing is an invasive procedure, so not a lot of doctors want to do it, but after seeing my extensive timelined list and my condition, I was able to get probing. And it turned out the probing was what was able to unblock my glands, the first major step to helping me get better. So itís worth it to come prepared and fight for these treatments!


            • #21
              Have you tried scleral lenses, hannahmaywils ? They may be something to consider, as Hokucat mentioned, if other options are letting you down right now. I guess sclerals are harder to come by in the UK though. I'm not a huge fan of them (it's taken 10+ appointments so far to get the lenses fitted half decently) but I currently wear them about 5-8 hours most days and it provides relief for my eyes. I would prefer to be able to wear them longer but that's not really working for me right now due to discomfort and cloudiness in the lenses. Maybe ask your doctor about this option. If you read Rebecca's recent blog she even recommends that folks who can no longer tolerate soft contacts due to dryness look into sclerals as a possibility.


              • #22
                hannahmaywils I asked to see a rheumatologist who then ordered more blood work. He was not caring at all, saying that does not matter if I have Sjogrenís or non-autoimmune inflammation because treatment is the same: Restasis. Obviously, he does not understand dry eyes or how important certainty is to the patients. Sjogrenís could have other symptoms, too, so I wanted to know as much as I could.

                After bloodwork returned negative, I insisted on a lip biopsy even though he said people get ulcers that donít heal. I read up online and did not see any indication of that being a typical outcome.

                Two months later, I have a tiny bump/scar on my inner lip and thatís it.


                • #23
                  I can't go so far as to say the IPL has helped me yet but I will do the 4 treatments and decide if there is any point in doing more. I have another one next week I think so fingers crossed that 4 will make a difference.

                  I had a biopsy and it left me with a small numb spot on my lip but I don't notice it unless I search for it. I would insist on it and NO the treatment is not the same. Some of it is but things like stem cell injections are not going to help if lacrimal gland dysfunction is not your problem...duh. He does not know that there is so much more out there for dry eye....I hope, for the sake of his patients that he is not the primary treating their dry eye problems!!


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